Teen has a sickle-cell game plan

Lem Satterfield and Bill OrdineBaltimore Sun

Lester Gregory, slender and serious, sat on a hospital gurney, two long tubes extending into each of the 15-year-old's lean arms.

Where a needle pierced the soft inside of his right elbow, fresh whole blood coursed into his veins: good blood to stave off anemia and invigorate him. From his left arm, clumpy, sickle-celled blood flowed into a large bag to be discarded.

"I've been doing this for so long -- since I was little -- I don't even feel" the needles, said Gregory, who was diagnosed with sickle-cell disease as a baby.

Blood transfusions, which Gregory has been getting for nearly eight years at Johns Hopkins Children's Center, help thousands of sickle-cell sufferers survive. But in the case of the high school junior, the monthly two- to four-hour procedure helps him defy the odds of the insidious disease even further.

Less than 24 hours earlier, the 5-foot-6, 130-pound Gregory was playing defensive back, albeit briefly, for the school football team at Kenwood High School in Essex, Md.

It's an accomplishment that astonishes medical experts.

Dr. Willarda V. Edwards, a physician who heads the Baltimore-based Sickle Cell Disease Assn. of America, said she was unaware of a sickle-cell disease sufferer playing strenuous athletics at any high level.

"I've wanted to play football since elementary school, and the transfusions help me to have that chance," Gregory said.

The ailment is an inherited disorder in which abnormal red blood cells impede the free flow of blood, resulting in less blood and oxygen reaching tissues. More than 70,000 Americans have the disorder, mostly people of African descent.

Though life expectancy for those with sickle-cell disease has at least doubled in the last generation -- sufferers now live into their 40s and even 60s -- complications can be acute. Gregory was near death twice when he was 2 and had a mild stroke when he was 8. Sufferers can experience severe discomfort, and the lack of normal blood flow can cause severe damage to vital organs and trigger strokes and heart attacks.

To be able to play football, Gregory needed consent from his parents and physicians. His family physician signed the required paperwork but with restrictions, including that he remain hydrated and take rests when needed.

However, Gregory's doctors at Johns Hopkins were unaware of his football participation. The morning after his first practice, Dr. Shirley Reddoch, a pediatric hematologist at the hospital, was alarmed at the teenager's unusually high sickle-cell count during his monthly transfusion, the likely result of exertion in practice. After consulting with Dr. Clifford Takemoto, Gregory's pediatric hematologist at Johns Hopkins Hospital, Reddoch agreed to allow him to play, the elder Gregory, also named Lester, said. But they urged caution.

"Football is not a sport that pediatric hematologists generally encourage for people with sickle-cell disease," Reddoch wrote in an e-mail to the Baltimore Sun. "The risks, as best they are known, as well as the fact that there are always unknown and unpredictable risks, are conveyed. The ultimate decision is between the youth, the parents and the sports coach."

Said Takemoto, who has treated Gregory since 2000: "The transfusions decrease the risk of having sickling complications [as a result of] exertional activity but do not completely eliminate the risks. [Gregory's] family was counseled about these potential risks and strategies to further reduce risks."

Gregory's mother, Lori Gregory, said "despite the risks, it was important to allow Lester to play because we saw how important it was to him."

When Gregory was 4 months old, he was diagnosed with Hemoglobin SS -- the most severe form of sickle-cell disease. From fevers to agonizing discomfort in the abdomen, arms and joints, "it seemed that from then on, severe pain was an eminent part of little Lester's life," Lori Gregory said. When he was 2, he suffered near-death pain crises twice in a five-month span; each required blood transfusions.

Meanwhile, his love for football was beginning to take hold. During the fall, the toddler would dash through the living room with a tiny football in his hands, mimicking the players on television. Still, he was limited to light activities, such as video games and touch football.

Once, after playing outside, Gregory, then 8, ran into his home "screaming, grabbing his head and complaining that it was hurting," Lori said. An MRI revealed that he had suffered hemorrhagic stroke, or bleeding in the brain. Soon after, he began receiving monthly transfusions.

Gregory remembers the day he stepped onto the practice field for the first time. "I got butterflies. But wearing the equipment, shoulder pads and the helmet -- that felt really cool," he said.

Even after his parents and doctors allowed him to play, Kenwood football coach Tony Ruocco was concerned by the stern tone of the medical note he received. In part, it warned that Gregory's condition "can flare during extremes of temperature and stress" and that such flares can lead to "sudden cardiac death." he needed to be allowed to hydrate "aggressively and without restrictions."

"I was like, 'Sudden death? Wow, this is scary,' " Ruocco said. "I told Lester, 'If you want to go and get water, you go and get water. You don't even have to ask.' "

As Kenwood has marched to a 6-2 record, Gregory has had no health problems, says Ruocco, adding that the relatively slight reserve safety has "held his own" during tackling and blocking drills with some of the team's veterans. "At first, he was a little intimidated," recalled Kenwood linebacker Donnell Flemming. "But I told him to bring the noise.

"I wasn't aware of his disease until after I asked him why he missed practice. He said it was to get a blood transfusion for sickle-cell disease. I said, 'You're still Lester to me.' He'll get no pity."

Although Gregory is a backup for his high school team, playing sparingly, his story has caught the attention of Denver Broncos cornerback Domonique Foxworth, a former University of Maryland star. "I told him I thought what he's doing is very impressive and inspiring to me," said Foxworth, who carries the sickle-cell trait. "There's nothing in my life that I have done or will do that I believe compares to what this young man is doing."

For Gregory, getting the chance to play football helps him endure the disease and the transfusions. "Unless they come up with a cure, it's going to be with me for the rest of my life," he said. "If there is anyone else out there with sickle-cell who has the dream to play football or any type of sport, maybe I can be an inspiration for them to do what they want to do."